To label or not to label? That is the question.

“What labels me, negates me.”
― Friedrich Nietzsche

I've currently got my health diagnoses listed in my twitter bio. I've included that I've got: Crohn's, Depression, Fibromyalgia. I did this to help others with similar conditions to find me/follow. It's a great way to connect and is how I met the numerous Crohnies as well as others who are chronically ill. And as I'm learning, twitter is all about connecting/networking. It's a great tool and I love the many people I've met, many of whom I follow for my varied interests (amongst which is health related, but it's a very interesting and eclectic group)

Anyway, lately I've been thinking about my twitter bio and whether or not to remove the labels which identify me as someone who is chronically ill. On the one hand, it is a large part of my focus and what drew me to twitter in the first place. On the other hand, it brings me down each time I look at my bio, as it is a constant reminder of my illnesses.

The twitter bio is the first thing people read when choosing whom to follow (at least, that's what I do, I read bios, cos I'm nosey like that, Ha!) anyway, I don't just want to be thought of as someone who carries SO many illnesses. It's a wonder more doctors and pharmaceuticals don't follow me. Haha.

Though I follow A LOT of people I try my best to interact as much as possible. It's a great way to bring myself out of my moods and also to distract myself from my pain.


To label or not to label? That is the question.

It's all about how I identify. I am chronically ill, but that doesn't define me. Hopefully by now, people who follow me have seen beyond that. The fact that they continue to follow, must say I'm not all that bad? lol

I don't know where I'm going with this post. Feels more like a ramble.

I have to think about this more in depth. To get to the bottom (NO pun intended, Ha!) of what is bothering me about the labels/bio. Hmm. I feel it's too limiting. And the bio is essentially a person's first impression of me. It's not until they (hopefully) interact with me that they can get a better idea of who I am. It's not like I spend the majority of my time tweeting about my illness, symptoms, etc. I *could* just leave the #ChronicallyAwesome hashtag, which encompasses the illness but what goes beyond it. Hmm. I'm so tempted to go and remove those labels. Something to ponder.


I came across the Nietzsche quote as I was writing this:

" What labels me, negates me."

This is exactly where I was going with the post. It perfectly encompasses how I'm feeling about labeling myself as someone who has SO many chronic illnesses. Because in doing so, I feel that the illnesses overtake me.  And in doing that, I take away from who I am (whomever that may be).



For now I'm just Kat. aka. "Alice". 
A girl who fell down the rabbit hole,
got lost in Wonderland.
 and is trying to make sense of things.

that awkward phone call

That awkward phone call


that I just received
from a friend
I've had since the 5th grade.

Not said out right,
but clearly implied,
was,
" I miss you".

The irony,
that just hours earlier,
I wrote a piece
about being missed.

So the phone call
was very awkward
and uncomfortable.

 It ended awkwardly
with
 "let me know when you are receiving visitors".

Ouch! That really stung.

I was tense the whole time.

She brought up facebook
(on which I have gone M.I.A.
since summer of 2011!
at which point
I ran away to twitter)

You can run, but you can't hide.
 Life exists, and it is calling.

How much longer
can I stay
down this rabbit hole?
I like it down here,
in my world.
It is safe.


But my world
includes the people
whom I've excluded
pushed away
Hurt.

Because I am cognizant of how much I've hurt people.
And I feel so much guilt and shame over it.

I owe so many people apologies.

My departure was very sudden.

The onset of depression
crept over me
caught me unaware
so that it was a very
gradual process
that overtook me
in which I lost interest
in everything

Speaking to people
began to feel like a chore

So many questions
about how I was doing
every
single
day.

As if my pain
and my condition
miraculously improved
in the course of
24 hours

Then there was the energy
which I did not have
to reciprocate
and get involved
in their daily lives as well
to ask questions
to engage in conversations

I couldn't engage in life

engaging
was so difficult
that I withdrew

so many unanswered calls
texts
emails

so many people
with whom I lost touch
people
who care about me
and must be feeling
hurt
confused
shunned

when they did nothing wrong


It's not you, it's me
 it really is me.
Or my depression

Depression
that is like a
captor
that has me locked away
from reality
imprisoned

but eventually the captive
must be freed
if not by will
then by force

I have to fight back
I am fighting back
daily

I give myself credit for that
slowly I am coming out of it
that depression

I am not the person I was a year ago

the person who "ran away" from facebook
and the person I am now
are two completely separate individuals
and yet they aren't

Is this a lie I am telling myself?

Is it that I am someone different
or that I am denying
and repressing a part of myself
the part
that is too painful
for me to acknowledge

There is a world out there
that I do belong to
whether I choose to accept it or not

While it is safe to be
down the rabbit hole
I can't stay here forever
it is not therapeutic

I can't hide behind
my diagnoses

And I realize now
that it is
 exactly 
what I've been doing

Yes,
I have PTSD
but how will I heal
if I don't address my fears
my triggers

Because the people,
places
and things
which I am avoiding
are
the people
places
and
things
which I need in my life

Maybe this call was a reality check for me
a reminder that I am missed
because I am wanted
and because I want it too.

I want to rejoin the world
I have changed
each day I grow
I've met new people
but I can't erase my past

Most importantly
I am not alone
I belong to a community
to my family
my friends

Even though I get in my way
though I lock myself up
and don't allow anyone else in

I can't blame the depression
it is not the captor
rather
it is me

I need to work on
bringing myself out
of this cage
and destroying it
to prevent myself
from feeling tempted

because once I lock myself up
it is so tempting
to throw away the key
and never
let myself out

yet that is no way
to live 
and it is not what I want

#WegoHealth: "You think you know, but you have no idea..."

 

 

 

 

 

 

You think you know what it's like to live with Crohn's Disease; a chronic, invisible,  incurable illness, but you have no idea.

 

You think you know what it's like to miss me, but you have no idea what it's like for me to miss myself.

 

 

 

Those 3 dreaded words:

 

 "I miss you." 

 

They make me feel resentment and sadness.

Because as much as you may miss me,

I miss myself even more.

 

Most people would feel some kind of relief at being missed by their loved ones and friends. It signifies we are important to that person. That our absence is felt from their life. Because of the positive impact we left on them.

 

But what happens when you suddenly become chronically ill, and who you are, becomes who you were?

 

It's even more difficult when the chronic illness is also one which is invisible. Outward appearances are deceiving,

yet it is so difficult for so many who know me to grasp.

 

 

My outsides don't match my insides.

I may look the same

 but inside,

I'm a mess.

 

During this past year and a half I've been through a lot.

Much like a soldier who has gone to combat

 and returns a shell of him/herself,

I too feel the change in me.

I am no longer who I was.

 

 

I miss who I used to be.

 

It's horrible, because I know I can never go back.

I have a hard time looking at pictures of myself,

because I see a stranger.

It's almost as if I disassociate because,

I know it's me,

and at the same time,

she couldn't be more of a stranger.

 

 I grieve for her.

The Kat pre-surgery.

Whose life was about to change drastically.

Who was about to undergo

the most traumatic experience of her life.

 

A part of her died.

She was altered

fragmented

into

the before

and the after

 

So when you say you miss "me"

I feel sad and also afraid

because I don't want to disappoint you.

You may think I'm strong

brave

courageous

cheerful

 but inside I'm doing everything I can

to hold myself together

because I'm falling apart.

It's hard to pretend I'm ok

when I'm not.

 

So I end up avoiding friends and family.

Because it's too much work

to be pretend to be the Kat they know.

The one they are comfortable with.

The Kat who no longer  exists.

 

 I don't want to worry anyone

or let anyone down.

I don't want anyone's pity.

So I retreat into myself

and shut myself away.

 Because it's so much easier

than putting on a fake smile,

and say I'm ok.

I hate being fake.

It's not in my nature.

 

You think you know

what it's like

 to miss me,

as if I'm intentionally avoiding you.

 

When in reality,

I am protecting you

from seeing me fall apart,

from giving you the burden

of feeling you have to help

put me back together.

 

 

You think you know

what it's like

 to miss me,

 but you have no idea

Because as much as you may miss me,

I miss myself even more.

 

down the rabbit hole of depression

unraveled
broken
sad
depressed
anxious
empty
emotional


I feel myself falling...
down...
down ...
down...
spiraling
...out of control...


tumbling down
the rabbit hole
of
depression

It happened so suddenly
I was fine on Friday.
I was ok Saturday morning.
But sometime later,
the physical pain
also became
emotional pain.


I find myself in this spot.
and don't feel like talking to anyone.


I'm in my safe space
and I've withdrawn.
I feel so empty
sad,
melancholic,
tearful


depression isn't something that can be easily explained or described,
you've either experienced it or you haven't.
And if you haven't, then you can't understand
the agony,
the desperation,
the rawness.


I'm learning that I'm an extremist.
I'm either happy, or sad.
I need the in- between.
The normalcy.
I'd been experiencing a sense of contentment.
What changed?


It doesn't make sense that I should go from one end of the emotional spectrum to the other.
After all, don't most people exist in the "in -between"?
In the balance?


I'm not balanced.
I'm not whole.
I am not together.


I am fragile
I feel shattered
broken
lost
unraveled


I feel guilt and shame
So self-indulgent and self-centered
because I can't give to anyone else
I have nothing to give
I can't pretend I'm ok
I don't want to upset others
I don't want pity
I don't feel sorry for myself


I would much rather experience the physical pain
at least there is something I can do about it
I know how to treat it




But this emotional pain
is unbearable
it's got me in its grips
and won't let go


I can't distract myself
or ignore this pain
agony




I have this ability to get in touch with my pain
with my depression
I can go inside
and it scares me
what if the day comes when I'm unable to come out of it?




I've got a fresh wound that is bleeding
and I don't know how to stop the blood


I feel dead
unhealable


It's as if I've committed emotional suicide

#HAWMC Day 29: Six Sentence Story- Broken Girl

#HAWMC Day 29: Hipster Alice’s Six Sentence Story

Broken Girl




The girl went to the hospital, where she was told they’d fix her.


But like Humpty Dumpty, once they took her apart, they couldn’t put her back together again.


After two surgeries they were able to patch her up, but inside there was a void that went untended.


The girl who was discharged from the hospital, was unlike the one who had been admitted, because she was now broken.


As the year passed she began a descent down the rabbit hole of depression.


The broken girl got lost as she wandered around, until she met kind people who helped her find a way out.










~~~~~~
@hipsteralice
Alice in Crohnsland
April Blogger In Residency for


http://www.whatthejules.com/april/347-hipster-alice-aka-kat

#HAWMC Day 22: Things We Forget

#HAWMC Day 22 Things We Forget

The Things We Forget

We can all use a reminder from time to time. We’re busy – Health Activists especially – balancing life, health, and online community is a challenge. When juggling so many things at once – it can be easy to forget the basic, yet fundamental, things that we know to be true (or important).


For today’s prompt – write yourself a reminder. It can be in the form of an online post. Maybe your reminder is related to health or well-being. Maybe it’s focused on staying positive. Maybe it’s a little joke that you have with yourself. Maybe it’s dedicated to your community. Or maybe it’s something related to writing (Cross your T’s and Dot Your I’s! – Spell Check is your Friend!). No matter what you decide to come up with – consider it a little piece of writing – and exercise your ability to be concise but powerful.



The first “reminder” I have chosen is an actual picture and quote of Frida Kahlo’s. It’s one which I like very much and would make into a magnet. Or I could print it out and tape it on my wall.


The reason I chose this particular pic/quote is because of the theme which is consistent with my last two HAWMC posts. And that would be the feeling of displacement. Lately I’ve been struggling with the feeling that I don’t fit in anywhere. I’m in a state of transition that for now has me feeling like I’ve lost my place in the world. As someone who is chronically ill and home bound, it’s easy to feel that I’ve lost my place. But beyond that, is also the feeling of being different, broken, fragmented, which I’m sure is partly due to my struggle with depression. Not only do I feel displaced within the world, but within myself. I feel broken.


T


Thus, this quote, ” I used to think I was the strangest person in the world. But then I thought, there are so many people in the world. There must be someone like me who feels bizarre and flawed in the same ways I do. I would imagine her, and imagine she must be out there thinking of me too. Well, I hope that if you are out there and read this and know that, yes, it’s true, I’m here, and I’m just as strange as you.”


It’s amazing how deeply this quote touches me. As I type this quote I not only have goosebumps, but I have tears in my eyes and a lump in my throat. It’s as if Frida wrote this for me. I relate to her in so many ways. I feel so comforted by her words. Like her, I also feel so flawed and shattered right now. I feel displaced. I don’t know where I fit in, because there is nowhere for me. It makes me feel like I’m ok, even though I may be “displaced”, someone else has felt this way too. After all, she wrote that to me, as I’m the one reading it, and I picture her sitting here with me, telling me these words. And I suddenly don’t feel so alone. I feel ok. After all, she was. She led a full life, on her terms, and despite the pain, was unstoppable. I want to be as fearless as she was. Therefore my reminders are that: it’s ok to be different, I shouldn’t worry about “fitting in”. Rather I should embrace being different, being “strange” just as Frida did. She didn’t try to adapt to the world, instead, she made her own place in the world, through her fearlessness. She embraced her individuality. It can serve as a reminder to me when I start feeling overwhelmed and like I’m not good enough.  





 The second “reminder” is geared at my depression. I’ve talked about falling “down the rabbit hole” into the depths and darkness of my depression. Thus my reminder is the following quote:








“The dark does not destroy the light; it defines it. It’s our fear of the dark that casts our joy into the shadows.” - Brene Brown


Falling “down the rabbit hole” into depression is a very scary experience. In the depths of my depression it’s easy to focus on the negative, on the darkness. Yet, as stated in the above quote, my depression may be seen as shedding light to issues I need to face. It can be seen in a positive way, by allowing me to work on myself, to give myself the opportunity to grow. It is my own fears that “cast the joys into the shadows”, allowing me to only see and focus on the darkness, the despair. It’s common for someone who is depressed to feel that the pain of depression will never go away. To feel hopeless, dis-empowered. Yet it can be a time from which one can grow. Rather than avoid the feelings and that which is feared “the dark” , by exploring them, we are able to see past the darkness into the light, to look towards the shadows and once more find the joy. This reminder will be useful in giving me hope, which is something that is easy to lose sight of. Having Crohn’s, Depression, PTSD, and Fibromyalgia, it is easy to feel hopeless. But it’s important for me to see past my fears, to have hope and believe I will get better.


How do you intend to remind yourself of this particular truth that is sometimes forgotten? What would you remind your community? (Why not ask them to make reminders, too?)


I intend to remind myself of these truths by reading them daily (or more frequently if needed). When I’m feeling especially anxious I will look at this piece I’ve written and if I need to, will also write/blog. I will be tweeting the link to my blog, and also one of the pictures, to inform my “twitter community” of what I’m doing. I will suggest they make reminders in the hopes they find it helpful in coping.









@hipsteralice
April Blogger in Residency
Alice in Crohnsland for

http://www.whatthejules.com/april/335-hawmc-day-22-things-we-forget